Albinism: Uganda

While the plight of people born with albinism, especially youth, has received attention in countries such as Tanzania, the discrimination, trafficking and incomprehensible violence against those with the genetic condition knows no borders. Albino children, who are seen more as valuable commodities than human beings, suffer barbaric practices such as bloodletting, dismemberment, abuse, rape, discrimination and death. Often lacking national policies against the practices of witchcraft, the situation is rife with human rights violations that continue without accountability.

Last year in Kabale, a town in Western Uganda, I met Michael Sabiiti who, with the support of the North Carolina-based NGO Humanity Healing, has been rescuing local albino children from witchdoctors and human traffickers. Though many of these children are receiving support for the first time ever in their lives, there are still many challenges to their safety and transition back into the community. The experiences of these youth reveal the cultural stigma that often results in abhorrent abuses and how disability can be a social construct.

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"God created us, we are not a curse," she says. "We should be accepted for who we are." - Rebecca, 18, and her brother, Sitivin, 20. She was forced to flee from her home because of threats to her safety by local witch doctors. In much of rural, western Uganda children born with albinism are treated with discrimination by their communities and targeted by witch doctors who use their bodies in horrific practices. Rebecca's biggest fear now is that she will never experience a normal life; finishing school, marrying and having a family are things she desires but worries she will not have.

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Portrait of Florence, 19, and her daughter, Evelyn, 2. Florence was working one day as a digger along the hills of western Uganda, when she was approached by a stranger and raped. The assault was so remote, no one could hear her screams, she recalls. Upon returning to her village her family sought out the perpetrator to no avail. When she found out she was pregnant, Florence did what she could and found a man with whom she could raise a family. Florence’s plans for a normal life, however, quickly unraveled when her daughter Evelyn was born with albinism. The man refused to accept the child and threw her out. Her father also refused her. Florence was forced to flee to the same hills where the seed for so much strife took root. Children born with albinism suffer cultural myths fed to uneducated communities by witchdoctors - that they are magical, a curse on their families or called derogatory names like 'pigs' or 'ghosts' because of the color of their skin. Not only do these myths dangerously cloud the fact that this is a simply medical condition that needs attention with simple things like sunblock, hats or glasses, they create a culture of fear and violence towards them. Many children living with albinism have no idea they have a genetic condition.

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Kirabo, 5, (pictured here) and her two siblings, also born with albinism, were found hiding in the hills around Kisoro in Western Uganda after being abducted by child traffickers and then abandoned. Michael Sabiiti who has become a local advocate for children with albinism was tipped off by locals, rescued the children. With the support of Humanity Healing, Sibiiti was able to place them in a boarding school. In Uganda, children with albinism - seen less as human being and more as a valuable commodity - suffer barbaric practices at the hands of traffickers and witch doctors such as bloodletting, dismemberment, abuse, rape, discrimination and death.

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Hardly able to walk because of wounds on her feet, Karibo was hoisted onto a boda (Ugandan motorcycle taxis) to be taken to a local emergency care clinic.

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At the time of meeting Karibo, she had suffered severe burning and lacerations to her feet because, according to those taking care of her, of poor sun care and footwear, although the wounds were so bad it was hard to tell.

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Michael holds Karibo as the nurses clean her wounds.

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Karibo sits on a boda after the visit to the surgery. The yellow residue of the topical ointment covers her lacerations. Her feet are bare because she has no shoes.

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Karibo and her sister, Guidance, at their school outside Kabale.

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After retuning from the hospital, Karibo waits in the headmaster's office at school outside Kabale.

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Portrait of Natasha, 11, a.k.a. “Golden”. Abandoned by her family, Natasha was rescued by Michael Sabiiti and placed in a boarding school. Many youth born with albinism in Uganda, which is a genetic condition, suffer from generalized stigma, and are often considered a curse on their family. Sabiiti has a local radio show, which focuses on illuminating crimes against children and breaking myths related to albinism. The radio is still a popular form of spreading messages through the remote villages and villagers often anonymously call and tip him off to albino children missing or sighted.

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Natasha and her schoolmates. At the time of this picture, Natasha had been at the school for one month and seemed to be adjusting, making friends and performing well in school.

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A portrait of Natasha in her boarding room. The headmaster and his staff take extra care to ensure Natasha’s safety, but they fear traffickers could still target her because of the openness of the campus.

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Grace, 11, shown here at school, experiences challenges adjusting to her new life. Her family was forced to flee Rwanda after being targeted by traffickers. Grace and her brother, Quizzard, were born with albinism. Like many girls her age, she is becoming self-conscious about being different so she alters her look by dying her hair. In Uganda, children born with albinism, a genetic condition, are targeted by human traffickers and by witch doctors and their clients who use them in horrific ways like blood letting, sex or dismemberment, to gain wealth or health.

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Grace’s father tries to comfort her. Grace’s mood swings have grown more pronounced since moving to Uganda. Social stigma against people born with albinism creates a culture of fear, which can turn violent, around people with the hereditary condition that is characterized by the absence of melanin.

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Grace sits on the family bed in their rented room. Without warning, the family came home one day to find there former home razed to make way for a new road. The family-of-six were forced to move into a one room rental until they could find another option, increasing their anxieties.

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Grace and her brother, Quizzard, get ready for church. They sit on the family bed in their one-room home. Without warning, the family came home one day to find there former home razed to make way for a new road. The family of six were forced to move into a one room rental until they could find another option, increasing their anxieties.

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Grace sits on the family bed in their rented room. Without warning, the family came home one day to find there former home razed to make way for a new road. The family-of-six were forced to move into a one room rental until they could find another option, increasing their anxieties.

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Grace and her brother Quizzard wash up before church in Kabale.

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Portrait of Grace, 11. There are several types of albinism: while Oculocutaneous Albinism 1 and 2 (OCA1 and OCA2) affect the eyes, hair and skin, Ocular Albinism (OA) only affects the eyes. In Grace's case, OCA2, which has a higher prevalence among Africans, affects the p-protein, a protein involved in melanin production, resulting in some pigment production.

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It was around Christmas time fleeing to the same hills that Florence came upon another stranger, Michael Sabiiti, who has dedicated much of his time, with the support of Humanity Healing, identifying people living with albinism that are at-risk and protecting them from abduction and discrimination. Sabiiti had been tipped to Florence’s situation and was searching for her. Michael, with the support of the District Chief was able to place Florence and her daughter back with their family, although there is still internal family tension and discrimination towards them.

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Mujawimana Imelda, 34 and Happy, 2. “I cannot leave the children alone because I am afraid for their safety and health," Imelda says, who once leaving her daughters in the hands of neighbors returned to find them beaten and sun burned.

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Shanita, 7, was rescued after being trafficked and used by a witch doctor for blood letting. She was chained to a wall and repeated cut, her blood used in rituals for prosperity or good health. A wife of a client of the witch doctor noticed the girl, secretly rescued her in the middle of the night and called Michael. Shanita is now in school the first time in her life.

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With the support of school staff she is learning how to connect with others and begin her new life. I think what struck me most about this little girl was when I tried to get her to smile, and realized she didn't know how. She has not up until now experienced childhood in any way. Albinism occurs in all racial and ethnic groups throughout the world.

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As a child, Mary says she lived a segregated life controlled by her village and was forced to flee at 16. Today at 20, she is in vocational school where she is studying to be a secretary. She fears she will not be able to continue classes because of her declining eyesight. One pair of prescription glasses would change all of that.

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Rebecca, 18, receives a pair of glasses to protect her eyes during the day. Two years ago she dropped out of school because of issues with her vision. Ugandan youth living with albinism face many challenges to their right to education due to poor vision which can be addressed. A low level of education can lead to unemployment and affect their right to a adequate standard of living, leaving many in poverty. The sunglasses were donated by Humanity Healing.

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Wilbur, 12, fears going to school. Everyday he experiences the societal constructs that create constant adversity in his life. His is often beaten at school and has no friends. "They laughed at me when I delivered my son. No one would associate with me," says his mother, Barayagena, 40. "People here think these children are useless. I want people to know my son. It is support that will give him his future. The public must be aware of albinism in a way that integrates."

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Mary, 14, and Brian, 12, after each receiving a pair of sunglasses. The brother and sister live with a caregiver who worries constantly about their safety. They are not allowed outside unless it is to go to school. Albinism, a genetic condition resulting from a lack melanin production, occurs in all racial and ethnic groups throughout the world.

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Michael Sabiiti steals Jorum’s hat in a light-hearted moment in his class. Sabiiti often uses humor to connect the children he rescues with their classmates.

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Sharon, 10. "I have village boys escort her to school because she was being beaten along the way," says Sharon's mother, Imelda. "She does not play with other children and I constantly fear she will kidnapped and trafficked." Wilbur, 12, fears going to school. Everyday he experiences the societal constructs that create constant adversity in his life. His is often beaten at school and has no friends. "They laughed at me when I delivered my son. No one would associate with me," says his mother, Barayagena, 40. "People here think these children are useless. I want people to know my son. It is support that will give him his future. The public must be aware of albinism in a way that integrates."

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A nurse consults Michael on the follow-up care for Karibo who suffered burns and wounds so severe she was taken to a local hospital. Community indifference and lack of understanding of albinism as a genetic condition make it difficult for many youth living with albinism to take preventive measures to address vision issues or protect their skin from too much sun exposure. Access to adequate healthcare is also a general challenge.

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Natasha who was born with albinism carries a chair back to her classroom after recess. Albinism is a genetic condition that occurs in all racial and ethnic groups throughout the world but in Uganda and other African countries many born with the condition are discriminated against in ways that often lead to violence.